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  • 1.
    Eilegård, Alexandra
    et al.
    Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden ; Sophiahemmet University College, Stockholm, Sweden ; Department of Oncology Pathology, Karolinska Institutet, Division of Clinical Cancer Epidemiology, Stockholm, Sweden.
    Steineck, Gunnar
    Department of Oncology Pathology, Sahlgrenska Academy, Division of Clinical Cancer Epidemiology, Gothenburg, Sweden ; Department of Oncology Pathology, Karolinska Institutet, Division of Clinical Cancer Epidemiology, Stockholm, Sweden.
    Nyberg, Tommy
    ology, Gothenburg, Sweden ; Department of Oncology Pathology, Karolinska Institutet, Division of Clinical Cancer Epidemiology, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden ; Sophiahemmet University College, Stockholm, Sweden ; Department of Oncology Pathology, Sahlgrenska Academy, Division of Clinical Cancer Epidemiology, Gothenburg, Sweden.
    Bereaved siblings' perception of participating in research--a nationwide study.2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 2, p. 411-6Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of the present study is to examine bereaved siblings' perception of research participation.

    METHODS: A Swedish nationwide study on avoidable and modifiable health care-related factors in paediatric oncology among bereaved siblings who lost a brother or sister to cancer between the years 2000 and 2007 was conducted. Data are presented as proportions, and the differences between groups were statistically tested at the 5% significant level using Fisher's exact test.

    RESULTS: Out of 240 eligible siblings, 174 responded (73 %). None of the siblings (0/168) thought their participation would affect them negatively in the long term. However, 13% (21/168) stated it was a negative experience to fill out the questionnaire, whereas 84% (142/169) found it to be a positive experience. Women were more likely to report their participation as positive in a long-term perspective compared with men (p = 0.018).

    CONCLUSIONS: None of the bereaved siblings in this Swedish nationwide study anticipated any long-term negative effect from their research participation. A majority reported it as positive to revisit their needs and experiences throughout their brother or sister's illness and death 2-9 years following the loss. We believe that the stepwise approach used in this study contributed to the high acceptance.

  • 2.
    Eilegård, Alexandra
    et al.
    Karolinska Inst, Div Womens & Childs Hlth, Childhood Canc Res Unit, Stockholm, Sweden ; Sophiahemmet Univ Coll, Stockholm, Sweden ; Karolinska Inst, Div Oncol Pathol, Dept Clin Canc Epidemiol, Stockholm, Sweden.
    Steineck, Gunnar
    Univ Gothenburg, Sahlgrenska Acad, Div Oncol, Dept Clin Canc Epidemiol, Gothenburg, Sweden ; Karolinska Inst, Div Oncol Pathol, Dept Clin Canc Epidemiol, Stockholm, Sweden.
    Nyberg, Tommy
    Karolinska Inst, Div Oncol Pathol, Dept Clin Canc Epidemiol, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Karolinska Inst, Div Womens & Childs Hlth, Childhood Canc Res Unit, Stockholm, Sweden ;Sophiahemmet Univ Coll, Stockholm, Sweden; Karolinska Inst, Div Womens & Childs Hlth, Childhood Canc Res Unit, Stockholm, Sweden.
    Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier.2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 3, p. 683-91Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The objective of this study was to assess long-term psychological distress in siblings who lost a brother or sister to cancer 2 to 9 years earlier, as compared with a control group of non-bereaved siblings from the general population.

    METHODS: During 2009, we conducted a nationwide follow-up study in Sweden by using an anonymous study-specific questionnaire. Siblings who had lost a brother or sister to cancer between the years 2000 and 2007 and also a control group of non-bereaved siblings from the general population were invited to participate. The Hospital Anxiety and Depression Scale (HADS) was used to measure psychological distress, and to test for differences in the ordinal outcome responses between the groups, we used Wilcoxon-Mann-Whitney rank-sum test.

    RESULTS: Among the bereaved siblings, 174/240 (73%) participated and 219/293 (75%) among the non-bereaved. Self-assessed low self-esteem (p = 0.002), difficulties falling asleep (p = 0.005), and low level of personal maturity (p = 0.007) at follow-up were more prevalent among bereaved siblings. However, anxiety (p = 0.298) and depression (p = 0.946), according to HADS, were similar.

    CONCLUSION: Bereaved siblings are at increased risk of low self-esteem, low level of personal maturity and difficulties falling asleep as compared with non-bereaved peers. Yet, the bereaved were not more likely to report anxiety or depression.

  • 3.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska Institute.
    Jalmsell, Li
    Eilegård, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Steineck, Gunnar
    Kreicbergs, Ulrika
    Siblings' experiences of their brother's or sister's cancer death: a nationwide follow-up 2-9 years later2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 4, p. 435-440Article in journal (Refereed)
    Abstract [en]

    Objective

    The aim of this study was to examine siblings' experiences of their brother's or sister's cancer death and if these experiences influenced levels of anxiety 2–9 years later.

    Methods

    This nationwide survey was conducted in Sweden in 2009. All siblings who had a brother/sister who was diagnosed with cancer before the age of 17 years and who died before the age of 25 years during 2000–2007 were invited. Of those, 174 siblings participated (participation rate: 73%). Mixed data from the survey about the siblings' experiences of death were included as well as data from the Hospital Anxiety and Depression Scale. To examine the experiences, descriptive statistics and content analysis were used. Mann–Whitney U-test was conducted to investigate if the experiences influenced anxiety 2–9 years later.

    Results

    The siblings reported poor knowledge and experienced a lack of communication about their brother's/sister's death, for example, about the time frame, bodily changes near death, and about their own experiences. Siblings who reported that no one talked with them about what to expect when their brother/sister was going to die reported higher levels of anxiety 2–9 years after the loss. Seventy percent reported that they witnessed their brother/sister suffering in the last hours in life. Many of those who were not present during the illness period and at the time of death expressed regret.

    Conclusion

    It is important to prepare siblings for their brother's/sister's illness and death as it may decrease anxiety and regrets later on

  • 4.
    Sveen, Josefin
    et al.
    Institute of Neuroscience, Psychiatry, Uppsala University, Uppsala, Sweden ; Karolinska Institutet Stockholm.
    Eilegård, Alexandra
    Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden ; Department of Oncology and Pathology, Division of Clinical Cancer Epidemiology, Karolinska Institute, Stockholm, Sweden ; Sophiahemmet University, Stockholm, Sweden.
    Steineck, Gunnar
    Department of Oncology, Division of Clinical Cancer Epidemiology, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden ; Department of Oncology and Pathology, Division of Clinical Cancer Epidemiology, Karolinska Institute, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden ; Department of Oncology and Pathology, Division of Clinical Cancer Epidemiology, Karolinska Institute, Stockholm, Sweden ; Sophiahemmet University, Stockholm, Sweden.
    They still grieve-a nationwide follow-up of young adults 2-9 years after losing a sibling to cancer2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 6, p. 658-64Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: The aims of this study were to assess the prevalence of unresolved grief in bereaved young adult siblings and examine possible contributing factors.

    METHODS: The study was a Swedish population-based study of young adults who had lost a brother or sister to cancer, 2-9 years earlier. Of 240 eligible siblings, 174 (73%) completed a study-specific questionnaire. This study focused on whether the respondents had worked through their grief over the sibling's death and to what extent.

    RESULTS: A majority (54%) of siblings stated that they had worked through their grief either 'not at all' or 'to some extent' at the time of investigation. In multiple regression analyses with unresolved grief as the dependent variable, 21% of the variance was explained by lack of social support and shorter time since loss.

    CONCLUSION: The majority of bereaved young adults had not worked through their grief over the sibling's death. A small group of siblings reported that they had not worked through their grief at all, which may be an indicator of prolonged grief. Lack of social support and more recent loss were associated with not having worked through the grief over the sibling's death. Copyright © 2013 John Wiley & Sons, Ltd.

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